Vitamin D

Definitely don't overdo vitamin D as too much is fatal. It's one of the most dangerous nutrients to overdose. I think you need guidance from a doctor of nutritionist on how much is appropriate.

Some PWCs have high Vit D rather than low (active vitamin D, I don't know about storage Vit D). I think there is more to be understood here in terms of how it relates to other imbalances in CFS.

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Are you sure you're not confusing D3 with Vit. A toxicity, which definitely can be fatal in overdose?

I think lately there's been a realization that D is not really as toxic as we have been led to believe for many years (D3, at least), with some people saying that our estimates of daily requirements are absurdly low, the result being that most of us are actually chronically underdosed, and they are now saying the more the better. Not to mention the anti-cancer effects. I think even 5,000IU is probably a safe dose of D3 for most people, 10,000IU in deficiency states, although each person has to decide for themselves, of course.

Thanks Starcycle and everyone.
I guess I'll increase my D3, as I've been cautiously taking only about 2000 i.u. on the skin because some of the Marshall people warned against it. But most of you have gotten good results, so I'll definitely raise my dosage, especially now that I'm not getting any sunshine outdoors. My only concern is that I had high liver enzymes and I know that high D can do a job on the liver -- will have to get Doc to monitor.

If the D3 enzymes are low, imo that indicates some damage to the enzyme, not some kind of autocorrective down regulation (which personally I doubt even happens, but who knows - that's the first I've heard of the idea in re: CYP450 D3 enzymes). And if they're downregulated, it's doubtful the person is getting enough D.

My guess instead would be that higher intracellular calcium would be an attempted protective effect of the cell to get enough calcium as a result of decreased D metabolism, not the other way around. But that's just a quick idea off the top of my head.

Just curious, is it your active or storage D that was tested low? Or both? Did your specialist test parathyroid levels?

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What are the D3 enzymes, Starcycle?

I had my genetics done through Yasko and was +/+ for VDR BsmTaq and Taq and -/- for VDR Foq.

My Doc tested 25-OH D2 and it was <4 while 25-OH D3 was 29. The e-records they sent me didn't show the lab normals, but I know D3 ought to be around 55 for optimal health (per Mercola.com). I don't know about D2.

It's an inexpensive test and many doctors are including it now with annual blood chemistries, expecially in folks like us - I believe the test is specifically called 25 dihydroxy. The normal range is quite broad, 32-100, and toxic level is considered 200. It's probably worth mentioning if you are going to have lab work done if your doctor doesn't order it.

I was surprised that my level was 7. D3 5000 IU every other day brought it up to 23 in 7 weeks. (D3 is supposedly absorbed better than D2 or other forms of vitamin D). I think my OI is better, although I have no idea whether that had anything to do with it, but I've made no other changes to anything.

For myself, I don't believe I'd want to take large doses without testing and monitoring blood levels.

Dear Starcycle,
I was basing what I said on my fave book, "The Nutrition Bible" by Henry Osiecki and I definitely meant vit D not A
The Osiecki book says that 1,000 micrograms is toxic in the short term but that a dose as low as 75 micrograms a day is toxic if taken for years.

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People are different and have different needs.
Vitamins are also different. For example you got the synthetic forms and the natural form. My logical mind tells me, that synthetic forms are probably less safe then natural ones.

Dear Starcycle,
I was basing what I said on my fave book, "The Nutrition Bible" by Henry Osiecki and I definitely meant vit D not A
The Osiecki book says that 1,000 micrograms is toxic in the short term but that a dose as low as 75 micrograms a day is toxic if taken for years.

I've looked at Wikipedia which has a really detailed article and explains in detail the point you made, that they have been raising the level of what is considered toxic. It says really nobody knows how much is too much. The general thrust of the text seems to be that they keep raising the OK amount and nothing bad happens...

That is a good article - wiki seems to be getting better over the years.

But yeah, that was exactly what I was saying. The old estimates about "toxicity" are way conservative and way overstated. Our current understanding is that we can (and in many cases should) take more than we've been led to believe. I know for me my 25-hydroxy got completely wiped out by an SSRI somehow, never recovered, with 1-25 under 15 or 16, and it took a number of months at 5,000IU just to recover the storage levels to around 50. But if my conversion is right, 1,000mcg is about 40,000IU, and I don't think anyone is recommending doses like that, even in the short term, except maybe in particular cases of deficiency, or maybe cancer or something.

People are different and have different needs.
Vitamins are also different. For example you got the synthetic forms and the natural form. My logical mind tells me, that synthetic forms are probably less safe then natural ones.

After checking out the FWIW(for what it's worth) Protocol, and the fact that Vit D is a part of it, I remembered that vit d3 was the only treatment I have ever done that I noticed very fast and very significant results. A year and a half ago without my knowing, my Dr checked my d3 levels. This was around the time all the research was hitting the news about how many people, especially older, were deficient , and how that could lead to many severe diseases. Turns out I hardly had any d3. I took 50,000 iu Rx ,1 time a week for 3 mos. In less than 2 weeks my energy level skyrocketed. I went on 2,000iu a day after that and had it rechecked and it was holding. Energy held for about 8 mos

I wish I could get more sunlight in my system, Diesel. I fry like an egg and get rashy from enough sunlight to make any real difference in my D levels. Funny how different bodies handle seemingly ordinary things so differently.

I take 2,000 IU D3 every day as part of my treatment protocol, which is working really well! In the summer I try to get light on my skin also, but it's hard in the winter. D2 is also in one of my other supplements. I have read a lot of great things about taking D3 anyway even if you are not sick! I read some really interesting articles about it.

I upped my Vitamin D to 8000IU and I notice a difference. I have more energy, I'm recovering faster from PEM to where I can do more. Still have a million other problems, but I was able to go to the store, do my shopping, put away everything and I'm still awake and not dead yet. It seems like the higher I go with the Vitamin D, the better I feel.

I also had to start taking Aleeve for a hurt foot, and I'm finding the Naproxen helps alot, but it is shredding my acid reflux. Works great on my pain and stiffness, though. I didn't get the CFIDS rigor mortis when I came home, usually everything stiffens up and I can't walk around.

I can't take vitamin D at all, regardless of which D it is. I start to get nausea from it within a week even at just 400 iu. I am curious why Cheney believes it to be toxic. Because it is for me. I stop being able to do my walk around the block if I try and take D. If XMRV reactivates other viruses then perhaps it has something to do with our individual viral history as to whether D is toxic or helpful?

You can't get vitamin D from the sun from November through March if you live in a northern state in the U.S. or Canada.

I've got another thread going on tanning booths and vitamin D. As my bone doctor had me try tanning booths. There's an interesting discussion going about that if you search for that thread. ~Fern

I did see your remark about tanning booths, Fern, and I was intrigued; I hadn't known you could get vitamin D from them.

This illness is so different for all of us. I am taking some vitamin D as part of Freddd's B12 protocol. Since I haven't had any bad effects from that dosage (2,000), I'm tempted to try upping it to see if moving it up to Carrigon's dosage will help. Thanks to you and talkingfox for the suggestion.

Interesting, Vitamin D is just 1 of the few changes I have made in the recent months. I am taking 8,000 IUs, since I had a low 30 value when I was taking 4,000 IUs. I was thinking my increased energy lately was due to my CPAP machine and getting more sleep and rest?

Jody, we live in the same area and there is NO SUN here! In Dec I get S.A.D. symptoms, Jan/Feb pain really intensifies, spring I go into almost a remission (I love the spring!!) and summer I crash again. I think humidity in the summer has a OI effect on me.

I've started taking liquid vit D, I forget to take pills and just find liquids easier to take. I think it's helped energy and this Jan/Feb has not been as intense pain wise as previous years. I didn't realize you could take as much as 8,000 IU's. I've thought about trying a tanning booth too.

Haven't noticed any negative effects of the vit D, but I tried liquid B12 and that gave me heartburn/stomach upset.

Hi folks! Just talked to my bone doctor yesterday who is involved at the national level on Vitamin D recommendations to the FDA.

Apparently there are some kind of early mortality concerns coming out of recent research associated with really high D levels. He advised that 30 is the optimum safe D level right now. Sorry to post this, but I'd be careful!

400 units/day is certainly safe. But if you go above that you should probably monitor your levels via blood tests.

Hey thanks for the info, Fern! I will definitely look into this. Interesting that they have chosen the lowest of the range as safe - that is if they are still saying the normal range is 32-100. I know 200 is supposedly toxic. I wonder if they are finding that many people are taking it without the appropriate monitoring and possibly getting in to trouble with toxicity. I would imagnine for some people toxic levels could be much lower than that.